Zebras and Ducks

Anyone with Familial Polyposis is already a rare individual. National Registries show FAP occurring in 2.29-3.2 per 100,000 individuals. And if you're anything like me, this rarity is only the beginning of rare health issues.

My GI doctor has for a long time, quite accurately told me that:
 "You look like a duck, act like a duck, sound like a duck. But actually, you're a zebra".
She couldn't be more correct. She tells me that there's no reason I should have the severity of stomach pains, bloating, severe malabsorption, and issues with rich foods that I do. She has stated for years that I would be a perfect case study for medical students because I'm not your textbook example of a FAP patient, what is typical is never typical with me. Everything is the opposite. Doctors check your abdomen for a quiet gut, they actually shouldn't be hearing constant gurgling. However, because I'm always the opposite, my doctor knows that if she doesn't hear steady gurgling from my abdomen, I'm in serious trouble.

It's not uncommon for health issues from FAP to lead to other problems. And it makes sense. With years of malnutrition, other parts of your body are at risk. My neurologist and my physical therapist don't know what caused my bulging disc but my malnutrition issues, past and present, definitely have further complicated my neck issues as discussed in my previous post. Since my last post, my physical therapist diagnosed me with an ALAR ligament sprain and told me this is a rare occurrence and his first in his 20 years of experience. Seriously!? Well, go figures. Why not, that makes a total combination of 4 different issues with my neck - disc, joint, muscle and ligament. I'm pretty sure that the only thing left is for a broken bone. Ha. My neck issues change rapidly, improving and worsening without warning. And due to the constant unpredictability, my physical therapist has joined my GI doctor on the zebra train and now refers to me as a lil' zebra. I can't help but laugh, it's only the truth.

Being a zebra in a world of ducks can be frustrating. You don't really fit in, medical providers don't really know what to do with you, you're more likely to undergo much more testing and procedures in efforts to rule out what normally would be the cause of symptoms, more treatment methods you have to sift through in a trial and error basis. In spite of all the frustration, there is a positive side that the ducks won't experience or contribute to the medical field.

When you are a zebra in a duck suit and you have good medical providers, they can be armed with this knowledge to look for the stripes instead of the feathers, to remain open minded to alternative answers and explanations and to consult more with others in their fields. Consultation is beneficial to all involved - increased understanding, awareness and opportunities for learning and different treatment approaches to complex health issues.
So embrace your zebra stripes. I've learned to wear my zebra stripes as another badge of honor. Nothing makes me smile quite as much as when a medical provider, like my physical therapist, declares "There is nothing normal about you".
Nope, there isn't. And that's what makes me so special, within and outside of my medical issues.

Norms of the Unhealthy

Do you remember the last time you felt normal? How long did your new health changes become normal for you?
I remember the time that I felt normal, it was when I was 9. But don't remember what it's like to feel normal, no recollection...I imagine it would be no pain, eating wouldn't be bothersome, butt burn wouldn't exist but those are just speculations, not memories. Perhaps if I hadn't been so young when my life changed I'd be able to remember. But that's the thing, I don't remember much of anything from before my health changed. I have a few memories of events and people, but not many and they're more like flashes. So it makes sense that I wouldn't be able to remember feelings and sensations.

Trying to remember what normal is makes me wonder how long it took for my current health to become the norm for me. I'm further drawn to this wonderment as I've been dealing with neck pain from a bulging disc, muscle weakness and a joint issue for the last 4 months. The pain from the disc (which has since cleared) and the remaining muscle and joint issues hit me much, much harder than I would have ever expected. I've been experiencing pain daily in my neck. Now, I'm accustomed to my daily stomach pain. But this neck pain, I can't imagine becoming accustomed to. The neck pain varied greatly from dull to sharp, coming and going unpredictably without warning. The constant gnawing and unpredictability left me in bouts of depression and frustration, crying daily for periods of time.  I kept asking myself how in the world did my stomach pain and related symptoms ever become normal for me!? How long did it take and how long would the neck pain take to become normal for me. I was dumbfounded. I don't remember depression and anger over the stomach symptoms, that was directed toward the ileostomy and my medical providers. It's quite possible I was depressed by my health symptoms too, but that's not what I recall in those blurry memories.

I don't think I can fairly say that the ileostomy was ever normal for me, as I've addressed before I never accepted the ostomy but my physical feelings I did come to accept at some point. I don't think twice about having stomach pain or other bothersome symptoms anymore. They're an inconvenience and annoying but I expect them. I know certain foods will exacerbate my symptoms and yet I also know that I also can't accurately predict my symptoms at the same time. And although I don't prefer to feel sick the majority of the time, I'm oddly okay with it at this point. I don't usually feel frustrated or downhearted by it, this is my life. There's no way around it. Now how sad is that!? How long does this attitude take to develop, to be beaten  into everyday reality and acceptance without hesitation or rebuttal? I'd like to know how long this process took to wear me down to such an apathetic view. Is that what true acceptance is? I'm not sure and yet I remain unmoved to rebel, I utterly accept that this is my life and at this point, I know no difference. Either way, I've found a way to cope with the daily struggles and I'm grateful for that. Because the daily struggle of my neck is completely wearing and draining. The last 4 months have been the worst months I've spent in a very long time.

And to think, a muscle, joint and disc issue is what brought me to my knees emotionally after such a long physical and emotional fight with my FAP that I feel I had overcome 6-7 years ago as my health stabilized. Perhaps that's it, with my health stabilized for such a period, I've become unaccustomed to coping with additional health issues. I was no longer fighting daily extremely bothersome symptoms but instead was enjoying the gradual decline and eventual plateau of my health symptoms rather than the ongoing valleys I experienced for several years.
This is similar to a previous discussion  of my difficulty to willingly subject myself to medical tests and procedures now, I've had a sense of freedom from the rigorous course of tests we often are subjected to. I've broken free for the time being and emotionally I can't make myself go back there, whereas previously I was stuck there...what was another test, I was already emotionally raw without anytime to retreat into a post battle wound licking or recovery. But I have now for 7 years, I've been free from the constant barrage of medical harassment. My coping has suffered as such, I'm at a fairly peaceful place in my life and I'll go back to the medical nightmares kicking and screaming before I accept those again as normal.

Anti-Inflammatory Diet Conclusions

The anti-inflammatory diet that I started has come to an end and although I feel better, I don't believe any my results were due to eliminating food allergens. To recall, the anti-inflammatory diet eliminated gluten, soy, corn, dairy, caffeine, sugar, alcohol.

I experienced the same feel good results as when I eliminate junk food, carbs, and starches and eat healthier in general. These are the same results I've experienced many times when watching what I eat by merely watching my calorie intake. When I eat healthier foods, I have less bloating and sluggish feelings. I usually have some increased energy as I'm not feeling weighed down. This also results in reduced stomach pain and cramping. Just like when I just eat healthier, my diarrhea increased on this diet. I attribute the reduced bloating and constipation/sluggish feeling to the increased diarrhea that allowed my gut to thoroughly empty. My gut is emptied is when I feel my best anyway and thoroughly prefer diarrhea to constipation.

 I did mention some sleep improvement at the first week of the study, but my sleep has been erratic since I discontinued Gabapentin for my bulging disc and it has remained erratic to this day. I seem to sleep better after several days of poor sleep where I wake up after 3-4 hours of sleep and remain awake for another 2-4 hours. This cycle leads me to become exhausted and thereby allowing me to sleep well for a night or two.

Although I try to limit my intake of milk and ice cream (due to not liking milk and the calories of ice cream), I do have increased diarrhea from these two dairy products. However, I still maintain that the side effects of milk and ice cream on my digestive system is due to the magnesium in milk and the sugar of ice cream. I've noticed that high sugar foods often result in increased diarrhea and magnesium is a natural laxative. I don't have the same side effects from other dairy products so I don't believe I'm lactose intolerant. 

So in conclusion, although this diet has benefited others I do not notice enough of an improvement for me to continue a life on the anti-inflammatory diet. Instead I will continue my efforts to eat healthy and will enjoy the benefits of healthy eating.

Anti-inflammatory Diet Progress

The anti-inflammatory diet study started the 17th so I've been on it four days so far. I've noticed a few changes thus far.

My appetite is decreased, I feel fuller with less food and fewer urges to snack. I've been going to the bathroom more regularly. As you may recall from earlier, I haven't required my Lonox for over three weeks now because I had been very sluggish, even constipated feeling. I still am not requiring my Lonox but I'm not feeling so bloated, sluggish like.

I've lost six pounds, mostly water weight I'm sure. I've lost so much this week that a co-worker asked to be put on the diet too! I did require a potassium pill tonight but my potassium was low at my last lab draw a week ago so I wasn't surprised by the cramping. I'm just grateful I'm not requiring 9 potassium pills a day anymore, those suckers are huge.

Finding foods to eat hasn't been difficult even though it is restricted. I actually have too much food I can eat in my fridge and I'm afraid I won't be able to eat it all in time so I'm being mindful of possible need to freeze some food lol. I was very grateful when my mom brought me some homemade salsa as I'm not allowed store bought because most of it has forbidden ingredients. My frittata wouldn't have been nearly as good without my mom's salsa! I've even told my husband he can't have any of my mom's salsa lol!
The hardest thing to give up though has been coffee. It's not because of the caffeine either. Caffeine doesn't seem to effect me, I drank 11 cups of coffee and then went to bed 30 minutes after my last few cups one night. Didn't have a problem sleeping at all. No, it's more the sensation of coffee, the flavor, the feel of it on my tongue and filling my stomach. Cold or hot, I really enjoy coffee beverages and they've been a nice treat and even a filler when hungry. I miss it :(

I hesitate to say my sleep is better because my sleep goes in cycles since I stopped taking gabapentin and I could just be in a good cycle right now. My energy level hasn't increased but I've been sleeping soundly and not having difficulty falling asleep this week.

Overall the diet hasn't been bad. It's amazing the will power I have to follow a strict diet when it's really important to me. Besides currently, I've only followed strict healthy eating practices for my wedding and professional photographs. Lol. But I would consider research for us FAP'rs to be highly important and I'm appreciative to have been selected for the study.

Anti-inflammatory Diet to Begin

Tomorrow is the day, I start the anti-inflammatory diet for the pilot study. 14 days to be exact. I'm very eager to see how the diet effects me and at the very least I'm looking forward to eating healthier again and shedding a few pounds. Beyond that, I'm really hoping to notice a change in my sluggish feeling I've been having for about three weeks now, as I previously discussed last time.

I've reviewed the materials I am to follow and completed the health questionnaire rating my symptoms of the last month and family history. Boy, when you have to rate and score your different health symptoms you quickly realize what areas really bother you. To no surprise, gastric and stool symptom areas were most bothersome but my sleep and head symptom areas really surprised me.
Basically, for the diet I'm to avoid all gluten, soy, dairy, sugar, corn, caffeine, alcohol and additives. If I stick with fresh, unprocessed foods I'm good to go. Fresh vegetables except for corn, fresh fruit and meats will be my foods. I'm to limit beef and pork though, I can have rice and quinoa. It shouldn't be too difficult as long as I don't eat out. Although you can eat out, it sounds like it'll be more of a hassle than cooking at home so I'll be limiting restaurant meals.

I already try to limit carbs and starches in order to maintain my weight but I've also noticed that carbs, which most contain gluten and will be eliminated by this diet study anyway, seem to feel heavier on me and increased bloating. I don't have celiac and I've read that removing gluten from your diet doesn't have any effect on you unless you have celiac disease. I'm skeptical that gluten itself will have any effect on me but I, personally, suspect it's the carbs themselves that cause the negative symptoms for me. But, I'm not an expert and I'm not really concerned if it's the gluten or not. Just a personal observation and reasoning I've come to.

I'll be updating you with my experiences, symptoms and conclusions. Who knows what will happen but I'm ready to find out!